• Beaching, Exercising and Blogging!

    Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

    Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe.  After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

    On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles  help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process.  Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed!   See you next time.

    “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • Increasing the Exercise Routine

    Our first week at the beach is already over. 🙁 Last Saturday we attended the Parkinson’s Symposium sponsored by The Neuro Challenge Foundation and Sarasota Memorial Hospital. This is an annual event with 500+ attendees and included talks by recognized PD experts followed by a Q & A session afterwards. In between the talks we did two mini exercise sessions which included some voice exercises from the Loud portion of the Big and Loud program. We were joined at the meeting by Joel and Melissa whom we first met at Kripalu and then again here at the beach last year.
    At the meeting we met Brad and Lynn Schramek who founded the Parkinson’s Cafe for the purpose of providing social, cultural and intellectual interaction for people with Parkinson’s disease and their families. This years events include a visit to the Asolo Repertory Theatre and a visit to the Sarasota Ballet. Both agendas look interesting so we have signed up to attend them both.
    This week NPR (among others) talked about the benefits of exercise for Parkinson’s and so did all of the speakers at the Symposium. Since we arrived we have upped our exercise routine to include at least an hour walking plus Qi Gong and Tai Chi.  During my recent Doctor visit, we discussed my lack of arm swing while walking and he suggested using walking poles to improve my posture and arm swing while walking. So this week I took delivery of a pair of Green Zen Nordic walking poles from York Nordic and they definitely help with the arm swing, posture and pace.  I also started the Sinemet (Cardidopa/levodopa) at the beginning of the week and
    I have noticed reduced rigidity and shuffle along with the  improved walk times over last
    year’s beach visits.
    Also this week we have signed on to be Fox Trial Finder Ambassadors, which I’m sure comes as a surprise to regular readers 🙂 We are looking forward to helping spread the word about the importance of participating in clinical trials at support groups, events, informal meetings, and any other opportunities we get, like this blog.
    This weekend, our granddaughters (oh and their parents) arrive from Seattle for a week of beach fun so I’m thinking it will be another fun and busy week!  Thanks for reading.
    “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • Patient Centric Care in Action

    For the last few months, Mara and I have been discussing changing neurologists with the idea of being seen by a Movement Disorder Specialist (MDS). I was seen by a MDS when we went to U of FL last year we felt that it was too far of a drive for regular appointments. The Vanderbilt Movement Disorder Clinic in Nashville is also an National Parkinson Foundation (NPF) Center of Excellence, they conduct a lot of Parkinson’s research and it is a two hour drive instead of ten, so we decided that was where I would go. So this week I met with Dr. Thomas Davis, a MDS and clinical researcher and Director of the Vanderbilt Movement Disorder Clinic. It was a very positive experience and we were quite impressed with Dr Davis and the Vanderbilt Movement Disorder Clinic staff.

     

    After a simple check in process that took all of 5 minutes and only required my electronic signature on the usual forms, that’s right, I did not have to fill out any health history forms, who to contact, etc.! I had barely sat down when a nurse called me into an interview room where she took my BP, weight, and medical history once again without me having to fill out a form! She then took me to the examination room where we met Dr. Davis.

     

    During the meeting with Dr Davis we discussed my PD history, what medication I was on and how it was working, what other symptoms I was having plus he performed the usual PD tests, finger and toe tapping, walking, etc. He also tested  my cognitive skills and once again I passed! We then discussed my medication routine and he recommended I start taking levadopa/cardidopa along with a reduced dose of Mirapex four times a day instead of three. We were happy with this recommendation as it seemed the Mirapex has not been as effective in reducing my rigidity and I am taking the maximum dose. He also noted that exercise is still the best prescription for PwP and reducing the rigidity and other symptoms will allow me to up the exercise routine. The appointment lasted about 50 minutes and we came away feeling that he and the staff cared about me as a person and a patient and we had made the right decision to transfer to Dr Davis.

     

    We also met with Kelly Arney, research outreach coordinator, whom I had been in contact with last year about a clinical trial sponsored by NPF to track the effects of treatment. I did not qualify then because the trial required participants to be seen by the Clinic, but now that I am a patient, I should be able to participate beginning with my next visit at the end of April. We also discussed upcoming clinical trials with both Dr Davis and Kelly and they will contact me if I meet the qualifications.

     

    When I checked out, they had me sign up for access to their electronic health record system which gives me access to all of my records and a way to email Dr Davis. Again the process was simple and an employee walked me though the sign up at a terminal in the waiting area, then gave me full access to the system.

    The NIH defines patient-centered care as follows: “health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs and preferences and solicit patients’ input on the education and support they need to make decisions and participate in their own care.” The care we received at the Vanderbilt Medical Center Movement Disorder Clinic certainly fit the NIH definition.

     

    And the positive experiences continued because Friday we checked into our ‘home away from home’ a villa on Siesta Key! Yes that’s right, we are at the BEACH! We will be attending a Parkinson’s symposium on Saturday and I also plan to sign up for the Big and Loud program while we are here so I will have plenty to blog about next time. Until then don’t forget to sign up for the Fox Trial Finder, we all have a stake in finding a cure.

     

    “It does not matter how slowly you go as long as you do not stop.” – Confucius

     

Happy New Year!

OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!

Here’s what’s happened in our world since my last post:

We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!

I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!

We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.

Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.

If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.

I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Happy New Year!

OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!

Here’s what’s happened in our world since my last post:

We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!

I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!

We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.

Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.

If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.

I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Year: 2020

  • Happy New Year!

    Happy New Year!

    OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!

    Here’s what’s happened in our world since my last post:

    We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!

    I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!

    We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.

    Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.

    If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.

    I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.

    “It does not matter how slowly you go as long as you do not stop.” – Confucius